Lyme Policy Wonk – LymeDisease.orghttps://www.lymedisease.org
Sat, 25 May 2019 04:46:06 +0000en-UShourly1https://wordpress.org/?v=4.9.10LYMEPOLICYWONK: Who represents Lyme disease patients? Why it matters.https://www.lymedisease.org/who-represents-lyme-disease-patients/
Mon, 13 May 2019 23:33:53 +0000https://www.lymedisease.org/?p=33874Since December, the Lyme community has been waiting to learn who will be appointed as new members of the federal Tick-Borne Disease Working Group. You may recall, the 14-member panel was first formed in 2017, in accordance with the provisions of the 21st Century Cures Act. The idea was to bring tog...

]]>LYMEPOLICYWONK: Get your copy of the MyLymeData 2019 Chart Bookhttps://www.lymedisease.org/mylymedata-2019-chart-book/
Thu, 02 May 2019 19:39:52 +0000https://www.lymedisease.org/?p=31133How many participants in the MyLymeData patient registry ever had a Lyme-related rash? (34%) How many initially presented with flu-like symptoms? (64%). How many were misdiagnosed with a psychiatric illness? (54%) These are some of the details you can learn in the MyLymeData 2019 Chart Book. This re...

]]>LYMEPOLICYWONK: Take our survey on NIH’s Lyme disease strategic planhttps://www.lymedisease.org/nih-survey-lyme-strategy/
Wed, 27 Feb 2019 14:00:20 +0000https://www.lymedisease.org/?p=30142The National Institutes of Health (NIH) has invited public feedback on its tick-borne disease research strategy. LymeDisease.org will be submitting comments, and we want to include your opinions. The time frame is extremely tight, with comments due in two weeks. Please take the survey this very mome...

]]>LYMEPOLICYWONK: Why HIPAA privacy rules must not be erodedhttps://www.lymedisease.org/hipaa-privacy-rules/
Wed, 13 Feb 2019 00:55:19 +0000https://www.lymedisease.org/?p=29899When you walk into a doctor’s office these days, you’re handed a sheaf of papers related to something called HIPAA—the Health Insurance Portability and Accountability Act. HIPAA has to do with patient privacy, including questions of who has access to your personal medical information. It is regulate...

]]>LYMEPOLICYWONK: New blog helps interpret MyLymeDatahttps://www.lymedisease.org/mld-viz-blog/
Fri, 18 Jan 2019 16:50:16 +0000https://www.lymedisease.org/?p=29526The MyLymeData project has been in operation for more than three years now. With more than 12,000 patients enrolled, it is the largest study of chronic Lyme patients ever conducted. That’s a lot of facts and figures—literally millions of data points. To help readers make sense of all this, we’re sta...

]]>LYMEPOLICYWONK: Abandon “Post-Treatment Lyme Disease Syndrome” labelhttps://www.lymedisease.org/lymepolicywonk-abandon-post-treatment-lyme-disease-syndrome-label/
Wed, 12 Dec 2018 00:08:49 +0000https://www.lymedisease.org/?p=28905On December 3, I gave oral comments to the federal Tick-borne Disease Working Group. I focused on how use of the term “Post Treatment Lyme Disease Syndrome” (PTLDS) harms patients. The term was initially introduced by the Infectious Diseases Society of America (IDSA) as a research defini...

]]>LYMEPOLICYWONK: Using MyLymeData to Build a Research Enginehttps://www.lymedisease.org/hhs-lyme-innovation-speech-using-mylymedata-to-build-a-research-engine/
Wed, 05 Dec 2018 21:24:59 +0000https://www.lymedisease.org/?p=28785Yesterday, I was honored to speak at the US Department of Health and Human Services’ Lyme Innovation Roundtable, about the need to build the research capacity of Lyme patients to create sustainable change and accelerate research. To do this, we must embrace big data, precision medicine, and pa...

]]>LYMEPOLICYWONK: The problem of misdiagnosis in Lyme diseasehttps://www.lymedisease.org/misdiagnosis-lyme-disease/
Tue, 27 Nov 2018 20:26:16 +0000https://www.lymedisease.org/?p=28635My presentation to the Society to Improve Diagnosis in Medicine. On November 3, I was honored to give a presentation at the Patient Summit of the Society to Improve Diagnosis in Medicine’s (SIDM) annual Diagnostic Errors in Medicine (DEM) conference. This nonprofit organization seeks to integrate...

]]>LYMEPOLICYWONK: “Chronic Lyme disease” remains a contentious termhttps://www.lymedisease.org/lymepolicywonk-chronic-lyme/
Mon, 12 Nov 2018 13:56:40 +0000https://www.lymedisease.org/?p=28451“Chronic Lyme disease” is a term that still generates controversy in the medical world. I was recently interviewed by Charles Seales of Newsy’s “The Why,” who asked me what I’d say to people who claim it is not a legitimate diagnosis. Newsy is an online national news network. You can wat...